In fact, you might say I’m…wait for it….waaaaiiiiitttttt fooooorrrrr iiiiiitttttt…speechless!
Except, of course, I’m clearly not. I’m actually full of speech. Bursting with speech!
I’m referring to the issue with the third and fourth episodes in the second season, the ones that deal with parents showing up and wanting aides for their kids. Looking beyond all the major issues (funding, having aides that are full-time outside school, and all the other nonsense that makes for good TV), this particular issue completely stopped me.
Because, and this is the thing, one-on-one aides should not be the goal of every special needs parent.
First – they teach learned helplessness. Having a full-time aide, when they’re not absolutely necessary, means that the individual will have a harder time learning self-reliance and how to adapt to situations. Think about it this way: if you never had the opportunity or urge to do something because someone else would always do it for you, and possibly quicker or better than you could, would you do it? Maybe eventually, right? And what if they also made it clear to you through their actions (or even their words) that you would not be able to do that? That you cannot do it. That you should rely on them.
My son ran into this issue at school. He had been doing fine getting onto the bus after school by himself. He knew the routine, and he’d run through it without any sort of incident. Then his teacher had to start coming out with a new student. He went from capable to reliant on help in just a few days. Instead of getting on the bus by himself, he waited for her to tell him what to do, and he would want help doing it. She had to fade back out to get him to start getting on the bus again by himself, and once she faded out, he was fine doing it without help.
Second – they teach reliance on and a connection to a single person, who is paid to be near them. At a recent training session I attended, we were asked to look at the people who are around ourselves and our loved ones with disabilities. In many cases, those with disabilities are surrounded not by friends and loved ones, but by those who are paid to be near them – often nurses, therapists, aides, and other types of caregivers. Those very people, though, aren’t going to stick around too often or for too long. They do what they do because it’s a job. Yes, they probably care about the people they care for, but it’s still a job. When the money runs out or when something changes in their life, they will probably go on to pursue other options. They care, but it’s not the same kind of care that you find from someone who chooses to care.
Plus, when the caregiver leaves, they might be taking all that knowledge about the person with them. If the caregiver is a single point of contact, and they leave, then the person with a disability has been abandoned. They have been left alone. The one person who was with them is gone. If they had any sort of emotional attachment, it is severed, and it might have been severed quickly and with no regard to any of those feelings.
Third – they teach other people to stay separate or apart from the person being helped by the aide. Instead of the person being able to directly interact with the people around them, instead of them being able to learn how to communicate with others (and teach others to communicate with them), an artificial wall has been erected. In a school setting, students aren’t as likely to approach another student if they have to go through an adult to get to them. In a real-world setting, if a person will disabilities is kept apart from others through that aide, how will the person ever get to know anyone else? If they aren’t allowed to communicate, how will they make friends? How will they develop their own community?
When my son was younger, we thought having a one-on-one aide was the best solution for him. We’d heard so many good things about it, mostly the types of things that appeared on Speechless when it was time for all the parents to ask for an aide. Aides are the best! Aides will give your child everything they need! Aides are what make education successful!
I’m glad that our ARD committee decided against it. It wouldn’t have been a good thing our son. He wouldn’t have benefitted from him. Sure, maybe it would have made it easier for us and for him in the short run, but now he’s 15, and I’m able to look back and know that it would have been a mistake.
Speechless normally does a good job showing JJ avoiding learned helplessness. He makes friends who can lend a hand, like getting him drunk at a party. He tackles emergencies, like when he went camping with his father and had to make it to a far-away ranger station to rescue his father who is stuck in a bathroom. He attends a summer camp and participates in typical teenager hijinks. He’s an average, everyday teen who just happens to be in a wheelchair and need help communicating. Isn’t that the goal?
The gods of special needs kids and parents are capricious.
Yesterday, everything went as smoothly as anyone could expect for the first week of summer vacation. It got a bit rough at the end of the day, but Simon was tired and hungry, and who among us can cast the first stone for being in a bad mood in that situation?
This morning we went out shopping with a friend, and by the time it hit 11, he was getting upset, stamping his foot, whining, and doing everything else he does when he’s unhappy. Luckily, I got him to tell me that he was angry because he was hungry. Again, hangry is a legit thing for any of us. It totally would’ve broken Job, amiright?
We hit an early lunch at Whatburger. (Whataburger, if you read this, send me free coupons because Simon luuuuvs you!)
Simon showed he was hungry: he ate his food, stole fries from my friend, and drank two jugs of OJ. After that, he was calmer, said he was happy, and said he wasn’t hungry.
Things were okay after that.
We went home and chilled out. He watched TV and played with some of his birthday gifts.
Then it was time to go to HEB. For some reason, the grocery store is one of Simon’s favorite places to go. I don’t know if it’s because of the loaves and fishes. Oh wait, we don’t buy fish. Maybe it’s the cheese and bread to make grilled cheese sandwiches?
I don’t know why it is, but he loves it. He’ll wake me up in the morning by asking when we’re going to HEB. (HEB – if you’re reading this, give me some free coupons, too!)
We drove to HEB – he was happy.
We went into HEB – he was happy.
We shopped through most of the store – he was happy.
We walked into the produce area and ran into…his teacher from this past year.
The happy was gone.
Simon saw her, he touched her arm, she said hi to him.
It was all over.
He immediately began to talk about ESY (Extended School Year – like summer school for kids with disabilities) and school. His entire focus shifted to it. After fighting his obsession all weekend, he gave into it.
I tried to pay for out groceries and get us out of the store as quickly as possible, but he melted down at the register. I used all my tricks for calming him down, and none of them worked.
It was a very, very unsuccessful shopping trip.
So, I pray, dear capricious special needs gods, keep teachers and other school personnel away from us as we shop. (And don’t take it personally, but I think we’ll start driving out of town to a Kroger’s instead.)
At the thrift store, I spotted it.
One of those little statuettes from the 1970s. I remember having them in the house when I was a kid, up on the shelves with knickknacks and tchotchkes.
But this one. This one was for me:
World’s Best Mother.
I brought it up to the register to buy it, and the woman in line behind me saw it. Well, part of it.
“What does that say?” She asked.
“World’s Best Mother.” I picked it up off the counter and showed it to her.
And I bought it.
I don’t know about your house, but in our house, summer is rough. Simon *loves* school.
He loves the people. He loves the routine. He loves the activities.
Starting yesterday (Memorial Day), he began to focus on ESY (Extended School Year for y’all not in the know…it’s like summer school, but for kids with special needs who need extra help over the summer).
He spent the whole Monday talking about ESY, asking about it, telling us when it was.
Unfortunately, ESY is only four weeks long. Two weeks in June. Two weeks in July. Four days each of those weeks. Three hours each of those days.
4 x 4 x 3 = 36 hours.
Over nine weeks.
I’m going into the summer prepared and hopeful.
The World’s Best Mother award is part of those preparations.
Like most mothers – especially those of us mothers with special needs kids – there are more days when we feel like the worst mothers instead of the best mothers.
But we shouldn’t.
Even on those worst mother days, we’re still pretty good. As long as our kids are still alive, we’re still alive, and no one is going to jail, it’s a good day.
We’re the World’s Best Mothers.
School started on Monday!
Simon has been happy to be back on a schedule, and every day, he comes home and tells me that he’s going back to school, and I remind him that he won’t go back until the next morning.
Monday was good.
Tuesday was good.
Wednesday. Well. Wednesday was.
He got home, and everything seemed to be running smoothly, but then for no reason I could tell, something changed, and he began getting upset. He wanted dad home. He wanted dad home now, and nothing I could say would make it better.
Okay, I thought. Let’s try to go for distraction. (Seriously, sometimes I think that distraction is my best friend, although when it comes to ADHD, it’s my worst enemy.)
“Do you want to go run errands?” I asked him.
Oh, yeah, he was all in.
We went to the thrift store across the way.
And he was not all in. Not even close to partway in. He didn’t even have a toe dipped in there.
Instead, as we walked into the store, he began demanding dad. Loudly. Repeatedly.
He got more upset the longer we were there. I tried to get him to hold off, asked him if he still wanted to go anywhere else, told him that dad would be home when we got home. No dice.
He screamed more. He cried, tears streaming down his face.
Time to leave.
We got to the counter.
We had to wait.
Simon really, really, really did not want to wait.
He escalated in decibels, and he added in this little shrieking thing he does.
Now, I’m going to go back a bit.
When we were on vacation, I managed to pick up a cold. It didn’t really hit until the last day, but since it has hit, I’ve been congested and coughing, and I’ve had a sinus headache every day. It normally starts out hurting, and by about lunch time, it has gotten worse, and by dinner time, it’s turned into a migraine. What I’m trying to say is that the noise was bad for the people in the store, but I’m going to say it was slightly worse for me. I couldn’t go to another area of the store and ignore it, and I couldn’t stop it.
I tried to calm him down, like I had been doing. I gave him pressure and hugs, I rubbed his back, and I told him he was doing good at calming down (even though he wasn’t – but for some reason, telling him that he is doing it seems to make him do it sometimes).
He began slamming his hands down on the counter, shrieking.
I pulled his hands back, told him not to do it, and listened to him getting louder.
I considered leaving, but I had two things I really wanted, and I was seconds away from getting rung up.
No one said anything to me, but when I looked around, I saw the stares. Shockingly, people were not enjoying his meltdown. I had to balance what I wanted versus if I thought I was driving other people insane. It was a public place, I reasoned. And if I can’t get him used to going to public places and stopping a meltdown, then what will happen when I *have* to go somewhere and he’s having a meltdown?
I was going to try to wait it out.
I managed to pay with him only breaking free once more from a hug to slam his hands down on the counter. Then we were outta there.
I sent out a quick tweet, which showed up on my FB page, and I got a “sorry” and a frowny face.
I wanted to explain my tweet. And any of my other tweets when I say Simon is having a bad day or a meltdown or whatever else is going on that he (and I) aren’t enjoying.
I don’t mean the tweets to get replies of sympathy. I don’t want people to apologize for Simon – and me – having a bad day.
I’m really just trying to get out there and say, “Hey, this happens. Next time you’re at the store, don’t stare, even if you want to. Next time you’re at the store, realize that you aren’t enjoying the yelling, but neither is the kid – or adult – doing it. Neither is/are the parent/parents who are trying to help the person having the meltdown. Next time you’re at the store, have some empathy, not just sympathy. Next time you’re at the store, be aware why the other person is there, and why you might have to put up with something you find unpleasant. And, next time you’re at the store, if you hear/see this happening, why not run over to the person with a Starbucks gift card…”
Simon had a bad morning. Which seems fair because I had a bad morning, too. I seem to have picked up the stomach flu that’s going around, and I woke up with a serious headache, severe nausea, a stuffed-up nose, and a sore throat. Fun!
But still more fun than Simon had.
Apparently, starting at about 8 a.m., he began throwing a fit at school, demanding that his teacher call us because we would “take him to the zoo.” He told her to “call mom and dad” and that “mom will take you to zoo” and “dad will take you to the zoo.”
Uh. No. Nope. There had been no zoo discussions. No mentions of the zoo. No idea where the zoo concept came from.
But the argument about the zoo lasted.
I was still asleep and trying to feel better when the teacher tried to call me, so I didn’t hear my phone, but she called Patrick next, and he answered. Then he had to get on the phone and explain to Simon that no, no, we were not going to pick him up from school, and he was not going to the zoo.
That phone call happened at 9:30.
An hour and a half after Simon started wanting to go to the zoo.
At 10:15, he finally calmed down.
Let that sink in. It was over two hours of Simon freaking out because he got it into his head that we were going to take him to the zoo.
His teacher sent home an ABC page. (For those not in the know, ABC = Antecedent, Behavior, and Consequence. In other words, what happened to cause the behavior, what behavior was it, and then what happened because of his behavior.) The page goes into great detail about everything she tried to calm him down. It includes instructions, prompts, redirection, social stories, counting, alternative behavior techniques, squeezing a ball, and breathing. That’s a lot to do, especially when you consider that he was screaming at her and then getting physically aggressive with her, including scratching and pinching her.
It spanned going from the cafeteria to the classroom to his independent work time to group work time to quiet time to independent computer work.
And this is why we all need to be appreciative to special education teachers. Because this is what they deal with. This is what their days are like. This is what they are trying to help with.
At the same time, I also wanted to point out that while the teacher wasn’t enjoying herself, neither was Simon. That had to be a truly stressful time for him. He spent over two hours completely wound up. He couldn’t calm himself down, and he couldn’t get anyone else to do it, either.
Imagine, if you can, what it would be like to spend two hours completely freaking out. You are trying to get a message to someone, but you can’t. You are trying to get something you need, but you can’t. You are stuck, unable to communicate, unable to calm down.
He was better after that. He found a way to calm down, he had a good afternoon, and then he fell asleep on the school bus coming home. He got to go horseback riding at SIRE, and then, when he got home, he went to sleep.
But not before mentioning that he was going to “have fun” tomorrow “at the zoo.”
I told him that there would be no zoo tomorrow – he could go to the library, though, which he agreed would be a good replacement. I am thinking, though, that Sunday might be a day at the zoo now…